The Heart and Soul Family: Home Sweet Home

Tuesday, February 5, 2008

Home Sweet Home

We were discharged at 2pm and I can't tell you how good it feels to be home. We are stilling doing the albuterol treatments, but through an inhaler instead of a nebulizer, antibiotics, 2 more days of oral steroids, and FloVent. We got our oxygen delivered at home and trying to get things organized again. I'm so tired so I'm keeping this short but I'll update more tomorrow.

3 comments:

Krista said...: Hey friend...welcome home! All that "stuff" must seem overwhelming...but it has to be so much better than that hospital life. You'll get used to the oxygen at home...lugging that "portable" tank around...you're sure to build up some muscles!

Sending up lots of prayers for a very restful night...for EVERYONE!; February 5, 2008 at 8:00 PM
The Portas said...: YAY! Great news! I'm so glad to read this. Get rest whenever you can and give that cutie pie a squeeze for me.; February 6, 2008 at 6:54 AM
Kathy said...: I hope you guys were able to get some rest and are getting the hang of the O2...
We're just waiting for you to tell us how things are going...
still waiting...
just joking with you...(not really), but, I'll be patient...let you rest and take care of your princess.

But, anytime you want to tell me how you're doing...I'll check in later!
We're just glad that you are HOME!; February 6, 2008 at 7:30 PM

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Arianna Marie

Arianna was born on 11/26/06. 4 weeks premature, and weighing 4lbs 13ozs. She was born with a congenital heart defect called Tetralogy of Fallot, which is actually 4 heart defects, and was later diagnosed with an ASD. She had open-heart surgery on 5/22/06. Her surgery was to patch the VSD, patch the ASD, widen her pulmonary artery, and attempt to fix her pulmonary valve. They created a man-made pulmonary valve out of myocardium to avoid a conduit placement, which would require multiple surgeries. On September 21st, 2012 we got the news that Arianna's right ventricle pressures are too high and she needs a pulmonary valve placed. When we meet with the surgeon we found out she also has pulmonary branch stenosis and a possible defect in her tricuspid valve. He will be addressing all of these issues at the time of surgery. On October 18th, 2012, Arianna had her 2nd open-heart surgery.

At 5 weeks old she was diagnosed with a genetic disorder called 22q11.2 Deletion Syndrome, which is caused by a deletion of a small segment of the long arm of chromosome 22. This disorder has many names such as 22q Deletion syndrome, Velo-Cardio-Facial syndrome, DiGeorge syndrome, Shprintzen syndrome, and Catch 22. So far there has been more than 180 anomalies reported in this syndrome, which is highly variable from person to person and no individual has all of the anomalies. Arianna has overcome many obstacles and we find peace in knowing that God is working miracles in her life. We set this site up to share our family journey. We know that God has a special plan for Arianna and our family!

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Tuesday, February 5, 2008

Home Sweet Home

3 comments: